Rally for Riley

I am on day 3 of just feeling absolutely miserable. I wouldn't even call the pain the last few days a headache, it is straight miserable pain. I am supposed to have a comprehensive lab work up this week, something I have been asking for since October. I hope it reveals something and I will be asking for another neurosurgeon to look at my recent scans to get a third opinion on the extremely narrowed vein, second picture you can barely see it. The second opinion doctor will not respond to portal messages or calls. Here are two pictures from my recent scans that show the vein that would of been right under my tumor, you can very easily see how narrowed it is but I was told by a very prestigious hospital, "it's fine, you had a brain tumor, your scans are normal". There is nothing normal about having a brain tumor, there is nothing normal about having days of debilitating pain, there is nothing normal about blacking out everytime you move to quickly, there is nothing "normal" about any of this.

Well, it's been a few more weeks and still no game plan. Trying to get records where they need to be has been a joke. Today was rough, started the day in my normal way of throbbing head pain, but got up and ready, took Faith to school, had a good little morning convo with her, then headed to work. Head hurt so much that it hurt to move my hair. About lunch time I spun in my office chair to my left then back to my keyboard and everything went black. It was only a few seconds but very disorienting. Powered through the rest of the day, what else I'm I gonna do.

Hey Friends,
Sorry I have been away. I was hoping the next time I posted I would have some good news and plan in place but unfortunately that is not the case. Mayo answered absolutely no questions. They did do some much needed test that I feel will be valuable to yet another new doctor. But Mayo as a whole was disappointing, I had a doctor who had no personal skills of any kind and interpreted my test as "normal" because I had a brain tumor.. I am really starting to feel failed by the medical community, there is nothing "Normal" about having a brain tumor. Feelings as a whole are starting to feel very heavy. Having an autoimmune condition during all this makes some days very hard to decipher what is what. And I already struggle with the feeling of my body failing me and that it fights against me and then to have doctor after doctor after doctor say, "well everything is normal" or "I think it's anxiety" just makes me feel more of a failure and that I will always be this fragile person. I miss people, I miss being active, I miss being outdoors, and I miss just being able to do what I want on my own. Tonight is a rough night, just needed to vent a bit. Here is to tomorrow and the potential for answers.

Update 3: we are on our way home. I had my MRI and MRV today, already have the readings on it but it is a lot of words I don't know and I have no idea what it means. Will have to wait for doctor to explain. I have a virtual visit in the 6th. I have one more appointment he wants me to do but I can do it in Nebraska. I truly feel I got the information needed, now to just wait for the plan moving forward.
I am so thankful to have Adam through all this and best part to encourage me before the lumbar puncture...he told me he would get me a 'puncture plant'....🤣🤣...if you know me...I love my plants and that made me happy. Now to find the prefect plant. Back is pretty sore and bruising but hopefully feels better in a few days.

Update 2: Lumbar puncture went smoothly. My spinal pressure was high, the order for testing was to remove 6.8 ccs and she removed 19 to get me where I needed. MRI is tomorrow at 1:15 and they took lab work today also. If spinal pressure is the the issue, sounds like there is medication I can take to control it!

Update 1: He is ordering an MRI, MCV (scan of my CFS veins), eye exam, and lumbar puncture (eek)...Lumbar puncture is scheduled for 915 tomorrow, waiting on the rest. He wants to rule out Post Concussion syndrome (froming hitting my head twice), a clot in a CFS vein, or too much CFS fluid causing increased cranial pressure.

Bags are packed, house is clean, arrangements for kiddos and animals in place!! Getting a bit nervous but feel confident something will get figured out.

Had some coworkers...truly friends....give me a travel basket of snacks, drinks, and a little gas money for the trip. It was so appreciated!!

So blessed with so many wonderful people in my life. Times like this my heart truly hurts for people who can't see the positive/good in life. I stumble and feel so sad and defeated some days but I try my hardest to consciously name something good in my life in those moments, to not allow the dark have to much power.

I will make sure to update as the appointments progress. Thank you again for all your support and love!! 💚💚

Once again...I am humbled by everyone's show of support and love. Knowing I have so many people praying for me, loving me, and encouraging me is definitely what helps me get through.💚💚 I have had so many people ask if they can help with my trip to Mayo coming up. There are two ways I have come up with for anyone who would like to help...

1) to help with trip expenses my Venmo is

2) I don't know what to pack. I know I have two appointments for sure but then the rest of the time is based off what the doctors find and what they think needs done. So do I pack like I would when I had babies, a little of everything?

Much love to you all...I do believe this is the trip needed to get to the bottom of my struggles and on to the road of being able to be myself again. 🥰🥰

Well I went to today's appointment with high hopes to just be disappointed again. It started off with speaking with a med student who seemed eager to help and well informed and knowledgeable, spent an hour with him going over everything and him explaining what he knows... to the doctor coming in and going mostly off the med students documentation. Asked me a few questions and did a physical exam, brought up a few things that could be causing the headaches and even brought up my autoimmune and then waved his hand while saying...but that's unlikely...and to settle on anxiety, higher dose of antidepressant, and to be seen again in 6 weeks. I feel incredibly defeated right now. I have yelled at doctors the last few months asking and begging for something to be done besides talking and drugs, have had a doctor say I make valid points to do nothing. Our health care system is so so broken...I am still optimistic that next week will be different...I have heard incredible things about personal experience at Mayo and I hope I am the next to have a positive experience to share with the next person.

I will be heading to Rochester, Minnesota January 24th!!! Was able to set an appointment with Mayo Clinic today, have to plan on being there for a few days! Nervous but so happy to finally have a date! Now to get everything lined up, a place to stay, and hopefully this will be the start to a new normal.

I didn't think having a headache for as long as I have had could get any worse......ugh was I wrong....get a cold on top of it....Miserable!!! Prayers the cold is short lived and only 12 days till I see the new neurologist!! Still waiting to hear a date from Mayo.

Well... I am coming up on 60 straight days of headache/migraine. There are times where it's barely noticeable and other times like today I am just brought to tears....but good news....I reached to Mayo Clinic and was approved for an in person appointment. Waiting to hear on an appointment date....really praying this is the beginning of the end of these headaches and/or whatever is going on.

It's only 9am and it has already been a long hard day. I have always been one who will take time in the dark places but have a light shining to bring me back and be thankful for all I have. Today, that light is pretty dim and I am having a hard emotional and physical day. I seem to be increasing in my noise sensitivity and noise is a huge trigger for more severe head pain, headaches, migraines, which makes being at family gatherings hard. Today, as soon as I woke the physical struggle started and now the emotional struggle is even harder. I miss the old me. I miss being able to power through just about anything. I miss live music. I miss meeting up with friends. I miss going to church. I miss random dance/jam sessions. I miss cruising around with the radio up. I miss just being in a big group. Christmas time is one of my most favorite times of the year and my heart is broken that as of right now, I will not be able to enjoy all my favorites. Driving around looking at lights and listening to Christmas music. Be with family while all my nieces and nephews glow about their presents and squeal in excitement. Play games with them all. Just be in the same room with them all. I know today will pass and there will be light again... but right now I'm just so sad and so tired of my life being controled by something I have zero control over.

Hey All, sorry for not updating. So I ended up going 33 straight days of a head/migraine. 2 ER trips, 2 clinic trips, neuro trip to have no relief....day 34 I woke up and didn't have a headache, that lasted for about 5 hours then it was back. Day 35 and 36, I went most of the day without one, got my bathroom deep cleaned and started some prepping for bathroom remodeling, now the last 3 days it has flipped to having a headache most of the day. I did have another MRI of head and my neck. My neck MRI did show some degenerative changes/arthritis but no significant disc disease. My head MRI showed continued postoperative changes and atrophy of my cerebellum abnormal for my age. So far doctors act like it's no big deal, which is incredibly frustrating. I am the one living with this an atrophy of my brain abnormal for my age seems like a big deal to me. I asked for a referral for a new neurologist and the soonest that one could get me in is 10-11-24 so almost a year away... so I asked for another referral. I have had some pretty dark mental days...I try so hard to stay positive but some days it's just hard. But like everything else this life has tried to break me with....I will prevail. I have been doing my own research and have a few questions to go over with my rheumatologist to make sure there is not an autoimmune playing into all this. I have an appointment with him in about 3 weeks. Prayers are welcomed...especially for headache relief, ear ringing, and mental health! Thanks for sticking with me y'all....it means a lot.🥰🥰

Ugh...Day 23...23 days straight with a headache/migraine. Even after the shot of Toradol I got Tuesday, Wednesday couldn't handle it anymore and went to the ER, they gave me the migraine cocktail to which there was no relief. Gave me additional 2 medications and got 7 hrs of relief. Thursday I slept most of the day and still had a headache that night. At a loss of what to do. Have tried all my tricks I have learned over the years, tried different combinations of meds, tried relaxing, hot showers, back rub...😪😪

I finally gave in today. Today was the 18th straight day of having a headache. I have taken my daily meds, my PRN med, tried a sample of a different PRN med, OTC meds, with no relief. Today I went in an got a shot of Toradol (I hate Toradol), hopefully it breaks this headache cycle.

Hey All, it's been awhile! I have been mostly good since my last post, a few not so great days but my medication routine has helped a lot. Days like today are so frustrating, not only with migraines but my auto immune. They are similar in the way that I can wake up feeling great, like I did today, then bam....I'm on my face. Maybe they feed off each other and I'm sure they do but haven't pinpointed that yet. Today I woke up feeling good, had some energy, didn't wake up feeling tired like normal...went about my normal morning routine....drove Faith to school and was blinded by someone's insanely bright headlights....almost immediately started seeing flashing bright colors....my first warning sign of a migraine. Within 10 mins it was a fight to keep my eyes open, not a good thing when you are driving, and then blur spots in my vision started, also not good while driving. Texted my supervisor what happened and that I was going to rest for a little then head in. Woke up 2 hours later....even after that no relief, head hurts, sleepy, ear is aching, and nausea starting. Just took my PRN med, hoping it shuts this all down. Here is to better days!

I have had a few more doctors appointments and results come in since my ER trip. Shifting is most likely Not the cause of the problems I was having last week. I was told I have encephalomalacia, this is softening of my brain tissues and permanent damage from tumor/surgery. Which means my dizzy spells are permanent and most likely the ringing in my ears. My labs showed my sodium and potassium were low which probably made my dizzy spell feel worse. My sodium and potassium have been low for a time now, so will now have to start regularly checking them. I saw the ENT, he is trying to find a special kind of therapist to help with the ringing or find a place that can make devices that will help. I have another appointment this week, an eye appointment the week after, and a neuro appointment in 3 weeks. It was a very overwhelming week and the research I have done on encephalomalacia makes me incredibly sad but still trying to find the positive.

Had a little bit of a scare today. Two weeks ago I had a really rough night of getting dizzy and headache, being my stubborn self I decided to go home and go to bed. The next day, didn't feel 100% but better. This is what lead me to reaching out to neurosurgeon. Well yesterday, my vision started being weird and had such a bad headache I went to bed around 6 pm last night. Today again, not 100% but pushed through. I made it I think almost 2 hrs at work when I decided to go to the ER. My head was spinning so bad, headache was back, and my blood pressure was very high for me 144/95. Went to the ER, they right away got an IV going, did an EKG, urine test, blood work and ordered an MRI. Long story short, MRI was good...PTL!!! There is still a space in my head where the tumor was and they think my brain is shifting a lot to fill in that space and causing all the symptoms. Have to schedule a follow up and probably another follow up with ENT and eye doctor. But good news....no new tumor or surgery needed complications.

Well....I will be getting a MRI sooner than expected. I spoke with neurosurgeon and he feels it is necessary to do one with the continued ringing in my ears and dizziness. I honestly about threw up. The idea of having a MRI in the next week or two immediately sky rocked my anxiety about it. Many prayers are much appreciated!!!

Hello Everyone! There has not been much change since my last update. Scalp sensitivity and bug feeling still pretty frequent and intense at times. Where they had to cut my skull is also painful at times, hoping that is normal. The ringing in my ear has actually been a little more frequent and intense the last few weeks but I think it's because of increase stress. Nothing bad...all good, just things I have never done so it's a little stressful. God has been working in some pretty amazing ways lately and I continue to feel so blessed, not only to still be here but for all the good in my life!!! I know me personally, all I saw for many years was the negative, but with lots of prayers, hard work, and a change of mindset...I can see what I have been missing...and I am one blessed lady!! Much love and I am always here for anyone who needs a little help seeing the positive!!

Hey All, it has been awhile!! Finally was able to get a picture of my MRI with my tumor. Pretty crazy to look back at and see how big it was. Still having a few post op healing struggles. I have about a 3 inch circle of my scalp that gets this super sensitive, painful at times, and gets this weird bug crawling in my hair feeling and I also still have a very high pitch ringing in my left ear. Other than that I have been doing some strength exercises in the mornings and eating better and feel a lot stronger. Still take it day by day and just focus on feeling better then I did the day before! Much love to you all!!

Some people have been asking how I am doing in the healing process. I am doing well. I feel like I finally have hit a point I can start working rebuilding my strength and mentally/emotionally I am in a much more positive place. My ears still hurt from time but it's much easier to deal with now that I know there is nothing wrong with them and they just need time. My back is struggling. Recent x-rays show my arthritis is starting to show its ugly face in my L1 to L4 and these pressure systems we have had lately make some days unbearable but I won't let it slow me down. I believe all my strength and health goals will only help my back.

This day is finally here...I have been looking forward to this day all month!! Finally can say goodbye to this year and close it out. This year as been hands down the scarest, saddest, hardest, angriest, but yet most humbling year of my life. Some tried to challenge me and say things like "the whole year couldn't of been bad" or "yeah you had a brain tumor but it came out ok". And to me that is rude. It was not just a brain tumor...that whole situation was me facing my greatest fear in life until pathology was clear. It was exhausting on my body and still is. Made me weak by losing a lot of my physical strength, which caused a lot of mental struggles and led to so much more anger. It financially ruined all the hard work I had put in the last several years and it was not the only struggle this year. I lost my last grandparent. The one I was closest too. The one person who I knew without a doubt had my back. My biggest fan. Losing that person is a whole beast all on its own. Another personal situation (sorry not ready to be this publicly open about the details of this one) but this situation has impacted my life for the last 26 years. Is packed with emotions, mental health struggle and self worth issue. I was hopeful for a short time on this one and then more anger hit and I had to accept what is. Had another surgery which really fueled my anger and feeling weak. Lost even more physical strength and still healing. Most of this year I felt like I couldn't breath, I was just waiting for the other shoe to drop, what else was going to come my way. But, I can also appreciate the good sandwiched into this year. I am beyond grateful for all of you. Your support, your words of encouragement, your generosity saved me this year. I would not be ending this year where I am without all of you! I will never be able to say Thank You enough. Much Love and I sincerely hope you all have a wonderful evening celebrating the end of one year and beginning of a new one....I know I will enjoy games, sparkling grape juice, a table filled of nachos and the ones I love with a thankful heart I made it through 2022!!! 💚💚

BLOWN AWAY!!! And not by the wind....just received another miracle gift and the person has no idea how much it will me...my heart is so full!!! Thank you!!

Today I feel the weight lift even more. I finally had my appointment today to get my ear checked, been struggling with it since tumor surgery. I passed my hearing test and he said my hearing is great, my eardrum itself is still flexible like it's supposed to be and the fluid finally drained. The ringing in my ears and pressure I feel, sensitivity at times he thinks is all from having the tumor and is brain related and not ear related. I had the tumor for several years and it shifted things around, so everything needs to go back and fill that void of where it was. Said it could be up to a year to be "fully" healed from surgery. Which I have been told before. If the ringing does not stop in another 6 to 9 months, I will be able to get devices that will help or do cognitive behavior therapy...which I didn't know could be used for such things but cool...but I am confident in my journey to full healing and gaining strength back that it will subside and those things won't be needed. I went to my church alter a few Sundays ago and prayed that God would work a miracle and help me pull out of my funk....boy did he come through. I finally feel at peace and feel I can put all this behind me and just focus on getting stronger and healthier again. Thank you again for all your support and your miracles a long the way....I love you all and will never have the words to explain how grateful I am to have you all by my side. I hope you all have a Merry Christmas and a wonderful New Year!!! 💚💚💚

Tuesday was a good day....I got released from wearing my sling. Not having it on has helped so much with my dark cloud. With the end of the year just around the corner I can finally think a little more positively. I reflect and over think and analyze just about everything. I started this year off in such a good place, mentally, physically, emotionally that when things started happening it was hard to process. I lost my last grandparent, uncovered a life time truth I had been searching for, diagnosed with a brain tumor, brain surgery, shoulder surgery, had to be off my auto immune meds for so long that my struggles there increased, lost a lot of physical strength, struggled with memory issues (still some of this), still having trouble with my ear (hope to get an answer this week about that) and all the normal day to day life things that pop up. This week I realized I have been grieving a lot, grieving my grandma and grieving something I never had but always hoped of having and I was angry about it. That anger mixed with the anger I was having over my shoulder created a pretty self defeating mixture. The last few weeks I felt so ugly, alone, confused, and weak. Feeling weak was making me even more angry. Then I got cleared to be out of sling, this massive cloud just lifted. And after a long 6 months of not being able to do much, I started working out again in the mornings. Not even a week in and I feel so much better, feel stronger, and feel hopeful again that this year will end on a better note and that next year will be good!! God works in mysterious ways, there is plenty I still don't understand but I am wrapping up this year with the mindset....I survived, it could of been so much worse, and what's meant to be will be. Much love ❤️